Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Cj, I can sympathize. I do not remember being a tired as I am right now. I am depressed, unable to think and unable to work. I am terrified in what my future may hold. Soon to be 40, no retirement and no prospects for a way to make a living. So many of us need help If it weren’t for my children……. From: dominie [mailto:dominie ] On Behalf Of CJ Sent: Thursday, June 12, 2008 7:53 PM dominie Subject: SO TIRED>>>>>> I'm so tired of trying to find a way out of fibromyalgia. For 15 years I have been plagued with a malady of stange symptomes from this unforgiving " syndrome " of happenings to my body. And, I know all of you on this board can sympathize. But, when do you give up? After spending many thousands of dollars on Medical care at the Mayo Clinic, eating different prescriptions by the handful, trying alternative methods of pain relief. My list is so long it is embarrassing! For example, accupuncture, chiropractic, lympahtic drainage, massage, physical therapy, rolling on balls, techniques, crystals, prayer, reiki, colon cleansing, herbs, juices, vitamins, magnets, even a couple psychic readings!!! Some doctors believe in Fibromyalgia, most do not! We are not even listed as a disability. Yet so many of us are homebound searching daily for a treatment plan or cure to go on with our lives. Many of us are young and can't even imagine 40 more years on this planet living life like this. So now, others are going by ways of changing their diagnosis to a new name ME, or a new chronic fatigue syndrome name to see if we can get noticed. But it is all the same. Then there are doctors who are giving fibromyalgia a bad name by diagnosing anyone with complaints of more than one as fibro. Yesterday, I was at the pharmacy and their was a lady, telling her friend she was picking up her lyrica for her fibromyalgia in her knee! One day I overheard another lady taking elavil for her fibromyaglia in her back. Fibromyalgia is WIDESPREAD PAIN!!!! This is what is hurting us! Misdiagnosis by doctors who are looking to give someone an answer. I went to the Mayo Clinic Fibromyalgia Treatment center as well as the Chronic Pain Rehab facility. There was a thorough diagnosis with a Rheumatologist, Neurolgist, etc... So, now that I'm truly classified as having it...where does it get me? Disability with SS? nOPE! Belief in by my family and friends? Fraid not! Why, because I look good? I can't even function!!@!!!! I'm homebound, laying in bed most of the time. My cognitive skills are shot to HE???#### and I hate my life. Am I depressed? Yes, by the disease. What do you want to do with your life? Depressed people say " i don't know! " .. Fibromyalgia people say, I want to........blank and blank and blank. But I just can't! Well enough said. I just needed to vent tonight. Blessings to those who listened. Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Carolyn, You have expressed what nearly everyone on this board feels. Thank you for your incredibly articulate and moving post. - Dom > > I'm so tired of trying to find a way out of fibromyalgia. For 15 > years I have been plagued with a malady of stange symptomes from > this unforgiving " syndrome " of happenings to my body. And, I know > all of you on this board can sympathize. > > But, when do you give up? After spending many thousands of dollars > on Medical care at the Mayo Clinic, eating different prescriptions > by the handful, trying alternative methods of pain relief. My list > is so long it is embarrassing! For example, accupuncture, > chiropractic, lympahtic drainage, massage, physical therapy, rolling > on balls, techniques, crystals, prayer, reiki, colon > cleansing, herbs, juices, vitamins, magnets, even a couple psychic > readings!!! > > Some doctors believe in Fibromyalgia, most do not! We are not even > listed as a disability. Yet so many of us are homebound searching > daily for a treatment plan or cure to go on with our lives. Many of > us are young and can't even imagine 40 more years on this planet > living life like this. > > So now, others are going by ways of changing their diagnosis to a > new name ME, or a new chronic fatigue syndrome name to see if we can > get noticed. But it is all the same. > > Then there are doctors who are giving fibromyalgia a bad name by > diagnosing anyone with complaints of more than one as fibro. > > Yesterday, I was at the pharmacy and their was a lady, telling her > friend she was picking up her lyrica for her fibromyalgia in her > knee! One day I overheard another lady taking elavil for her > fibromyaglia in her back. Fibromyalgia is WIDESPREAD PAIN!!!! This > is what is hurting us! Misdiagnosis by doctors who are looking to > give someone an answer. > > I went to the Mayo Clinic Fibromyalgia Treatment center as well as > the Chronic Pain Rehab facility. There was a thorough diagnosis > with a Rheumatologist, Neurolgist, etc... So, now that I'm truly > classified as having it...where does it get me? Disability with > SS? nOPE! Belief in by my family and friends? Fraid not! Why, > because I look good? > > I can't even function!!@!!!! I'm homebound, laying in bed most of > the time. My cognitive skills are shot to HE???#### and I hate my > life. > > Am I depressed? Yes, by the disease. What do you want to do with > your life? Depressed people say " i don't know! " .. Fibromyalgia > people say, I want to........blank and blank and blank. But I just > can't! > > Well enough said. I just needed to vent tonight. > > Blessings to those who listened. > Carolyn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 I too feel the same way.My children keep me going .My youngest one is 3. I am 41. I went to the onocologist this week..I'll be getting some test results soon. They told me if I would take only a pint of blood that it might help with my Fibro.I thought about asking them if I could take the blood from one of my older children ..They are 18 and 19 .Both of my sons said they would give it too me,,,I know what you are going thru. BUT Depression is something so hard to bet..Please talk to your doctor Immediately..I just feel you really need to ,maybe its your medicine,,,HUGS dominie From: elizabethlculp@...Date: Thu, 12 Jun 2008 20:11:25 -0600Subject: RE: SO TIRED>>>>>> Cj, I can sympathize. I do not remember being a tired as I am right now. I am depressed, unable to think and unable to work. I am terrified in what my future may hold. Soon to be 40, no retirement and no prospects for a way to make a living. So many of us need help If it weren’t for my children……. From: dominie [mailto:dominie ] On Behalf Of CJ Sent: Thursday, June 12, 2008 7:53 PM dominie Subject: SO TIRED>>>>>> I'm so tired of trying to find a way out of fibromyalgia. For 15 years I have been plagued with a malady of stange symptomes from this unforgiving "syndrome" of happenings to my body. And, I know all of you on this board can sympathize. But, when do you give up? After spending many thousands of dollars on Medical care at the Mayo Clinic, eating different prescriptions by the handful, trying alternative methods of pain relief. My list is so long it is embarrassing! For example, accupuncture, chiropractic, lympahtic drainage, massage, physical therapy, rolling on balls, techniques, crystals, prayer, reiki, colon cleansing, herbs, juices, vitamins, magnets, even a couple psychic readings!!! Some doctors believe in Fibromyalgia, most do not! We are not even listed as a disability. Yet so many of us are homebound searching daily for a treatment plan or cure to go on with our lives. Many of us are young and can't even imagine 40 more years on this planet living life like this. So now, others are going by ways of changing their diagnosis to a new name ME, or a new chronic fatigue syndrome name to see if we can get noticed. But it is all the same. Then there are doctors who are giving fibromyalgia a bad name by diagnosing anyone with complaints of more than one as fibro. Yesterday, I was at the pharmacy and their was a lady, telling her friend she was picking up her lyrica for her fibromyalgia in her knee! One day I overheard another lady taking elavil for her fibromyaglia in her back. Fibromyalgia is WIDESPREAD PAIN!!!! This is what is hurting us! Misdiagnosis by doctors who are looking to give someone an answer. I went to the Mayo Clinic Fibromyalgia Treatment center as well as the Chronic Pain Rehab facility. There was a thorough diagnosis with a Rheumatologist, Neurolgist, etc... So, now that I'm truly classified as having it...where does it get me? Disability with SS? nOPE! Belief in by my family and friends? Fraid not! Why, because I look good? I can't even function!!@!!!! I'm homebound, laying in bed most of the time. My cognitive skills are shot to HE???#### and I hate my life. Am I depressed? Yes, by the disease. What do you want to do with your life? Depressed people say "i don't know!".. Fibromyalgia people say, I want to........blank and blank and blank. But I just can't! Well enough said. I just needed to vent tonight. Blessings to those who listened. Carolyn Enjoy 5 GB of free, password-protected online storage. Get Windows Live SkyDrive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 May God Bless you. I know how you feel , and i'm sure everyone else does here too.I pray you start feeling better.I've only been diagnosed 6 months ago, but have other serious problems too.I just pray tomorrow you will feel better.....Hugs ....you just really touched my heart...I want you to know that ..........Trust in the Lord with all thine heart and lean not unto thine own understanding. In all ways acknowledge him , and he will direct thy path. PROVERBS...3 verse 5 & 6 ....This is my favorite verses in the Bible..KJV> dominie > From: alliekeel@...> Date: Fri, 13 Jun 2008 01:53:04 +0000> Subject: SO TIRED>>>>>>> > I'm so tired of trying to find a way out of fibromyalgia. For 15 > years I have been plagued with a malady of stange symptomes from > this unforgiving "syndrome" of happenings to my body. And, I know > all of you on this board can sympathize.> > But, when do you give up? After spending many thousands of dollars > on Medical care at the Mayo Clinic, eating different prescriptions > by the handful, trying alternative methods of pain relief. My list > is so long it is embarrassing! For example, accupuncture, > chiropractic, lympahtic drainage, massage, physical therapy, rolling > on balls, techniques, crystals, prayer, reiki, colon > cleansing, herbs, juices, vitamins, magnets, even a couple psychic > readings!!! > > Some doctors believe in Fibromyalgia, most do not! We are not even > listed as a disability. Yet so many of us are homebound searching > daily for a treatment plan or cure to go on with our lives. Many of > us are young and can't even imagine 40 more years on this planet > living life like this. > > So now, others are going by ways of changing their diagnosis to a > new name ME, or a new chronic fatigue syndrome name to see if we can > get noticed. But it is all the same. > > Then there are doctors who are giving fibromyalgia a bad name by > diagnosing anyone with complaints of more than one as fibro.> > Yesterday, I was at the pharmacy and their was a lady, telling her > friend she was picking up her lyrica for her fibromyalgia in her > knee! One day I overheard another lady taking elavil for her > fibromyaglia in her back. Fibromyalgia is WIDESPREAD PAIN!!!! This > is what is hurting us! Misdiagnosis by doctors who are looking to > give someone an answer.> > I went to the Mayo Clinic Fibromyalgia Treatment center as well as > the Chronic Pain Rehab facility. There was a thorough diagnosis > with a Rheumatologist, Neurolgist, etc... So, now that I'm truly > classified as having it...where does it get me? Disability with > SS? nOPE! Belief in by my family and friends? Fraid not! Why, > because I look good? > > I can't even function!!@!!!! I'm homebound, laying in bed most of > the time. My cognitive skills are shot to HE???#### and I hate my > life.> > Am I depressed? Yes, by the disease. What do you want to do with > your life? Depressed people say "i don't know!".. Fibromyalgia > people say, I want to........blank and blank and blank. But I just > can't! > > Well enough said. I just needed to vent tonight. > > Blessings to those who listened.> Carolyn> > > > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Carolyn,I am homebound too. I have gone to too many doctors and you're right most of them do not believe in fibromyalgia. It is hard for people to understand and that is really hard on us. I went to school on full-ride volleyball scholarship and lost it due to fibromyalgia and narcolepsy. My coaches treated me really bad, as did my teammates. It is sad to say that after 4 years I am not any better-but I have accepted my illness and I'm learning to cope and deal with it. I feel guilty because I can't see my family and friends more, but I'm just too tired. I'm still trying to get my RN for nursing but it's hard when we feel the way we do. My big sister has MS, as did my grandpa. My mom has celiac sprue, lupus, severe anemia; and my aunt has extreme rhemitoid arthritis. I feel fatigued all the time. Sometimes it's hard to hold up my head (if you know what I mean), like it takes too much energy. I am sorry that you're not feeling good. This is so hard and I understand how you feel.Christy SO TIRED>>>>>>I'm so tired of trying to find a way out of fibromyalgia. For 15 years I have been plagued with a malady of stange symptomes from this unforgiving "syndrome" of happenings to my body. And, I know all of you on this board can sympathize. But, when do you give up? After spending many thousands of dollars on Medical care at the Mayo Clinic, eating different prescriptions by the handful, trying alternative methods of pain relief. My list is so long it is embarrassing! For example, accupuncture, chiropractic, lympahtic drainage, massage, physical therapy, rolling on balls, techniques, crystals, prayer, reiki, colon cleansing, herbs, juices, vitamins, magnets, even a couple psychic readings!!! Some doctors believe in Fibromyalgia, most do not! We are not even listed as a disability. Yet so many of us are homebound searching daily for a treatment plan or cure to go on with our lives. Many of us are young and can't even imagine 40 more years on this planet living life like this. So now, others are going by ways of changing their diagnosis to a new name ME, or a new chronic fatigue syndrome name to see if we can get noticed. But it is all the same. Then there are doctors who are giving fibromyalgia a bad name by diagnosing anyone with complaints of more than one as fibro. Yesterday, I was at the pharmacy and their was a lady, telling her friend she was picking up her lyrica for her fibromyalgia in her knee! One day I overheard another lady taking elavil for her fibromyaglia in her back. Fibromyalgia is WIDESPREAD PAIN!!!! This is what is hurting us! Misdiagnosis by doctors who are looking to give someone an answer. I went to the Mayo Clinic Fibromyalgia Treatment center as well as the Chronic Pain Rehab facility. There was a thorough diagnosis with a Rheumatologist, Neurolgist, etc... So, now that I'm truly classified as having it...where does it get me? Disability with SS? nOPE! Belief in by my family and friends? Fraid not! Why, because I look good? I can't even function!!@! !!! I'm homebound, laying in bed most of the time. My cognitive skills are shot to HE???#### and I hate my life. Am I depressed? Yes, by the disease. What do you want to do with your life? Depressed people say "i don't know!".. Fibromyalgia people say, I want to........blank and blank and blank. But I just can't! Well enough said. I just needed to vent tonight. Blessings to those who listened. Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Carolyn, it was good for me to see the things you've tried in order to get some relief from this syndrome. I stopped taking all meds for Fibro some time ago, got sleep testing, can't sleep without a sleeping aid of some sort or another with the CPAP machine, and have been feeling so much better the last five months. Have experienced some relief of stress at work, mostly just good stress at work now. I do now when things get very stressful, I am going to be in more pain. At this point I also realize once the stress has passed I will feel some relief from pain. I too have tried many of the things you have. I've found some relief with all of the services (chiro, acupuncture, etc.) I've tried and just pick which ever one seems to be most needed at the time. I find I do need to have at least a 30 minute massage most weeks, acupuncture every couple of weeks or so. Thank you for sharing your experiences and I do hope that you will get to a point where you are experiencing greater relief from this dibilitating syndrome. Deb Halvorson Re: SO TIRED>>>>>> Carolyn, You have expressed what nearly everyone on this board feels. Thank you for your incredibly articulate and moving post. - Dom>> I'm so tired of trying to find a way out of fibromyalgia. For 15 > years I have been plagued with a malady of stange symptomes from > this unforgiving "syndrome" of happenings to my body. And, I know > all of you on this board can sympathize.> > But, when do you give up? After spending many thousands of dollars > on Medical care at the Mayo Clinic, eating different prescriptions > by the handful, trying alternative methods of pain relief. My list > is so long it is embarrassing! For example, accupuncture, > chiropractic, lympahtic drainage, massage, physical therapy, rolling > on balls, techniques, crystals, prayer, reiki, colon > cleansing, herbs, juices, vitamins, magnets, even a couple psychic > readings!!! > > Some doctors believe in Fibromyalgia, most do not! We are not even > listed as a disability. Yet so many of us are homebound searching > daily for a treatment plan or cure to go on with our lives. Many of > us are young and can't even imagine 40 more years on this planet > living life like this. > > So now, others are going by ways of changing their diagnosis to a > new name ME, or a new chronic fatigue syndrome name to see if we can > get noticed. But it is all the same. > > Then there are doctors who are giving fibromyalgia a bad name by > diagnosing anyone with complaints of more than one as fibro.> > Yesterday, I was at the pharmacy and their was a lady, telling her > friend she was picking up her lyrica for her fibromyalgia in her > knee! One day I overheard another lady taking elavil for her > fibromyaglia in her back. Fibromyalgia is WIDESPREAD PAIN!!!! This > is what is hurting us! Misdiagnosis by doctors who are looking to > give someone an answer.> > I went to the Mayo Clinic Fibromyalgia Treatment center as well as > the Chronic Pain Rehab facility. There was a thorough diagnosis > with a Rheumatologist, Neurolgist, etc... So, now that I'm truly > classified as having it...where does it get me? Disability with > SS? nOPE! Belief in by my family and friends? Fraid not! Why, > because I look good? > > I can't even function!!@! !!! I'm homebound, laying in bed most of > the time. My cognitive skills are shot to HE???#### and I hate my > life.> > Am I depressed? Yes, by the disease. What do you want to do with > your life? Depressed people say "i don't know!".. Fibromyalgia > people say, I want to........blank and blank and blank. But I just > can't! > > Well enough said. I just needed to vent tonight. > > Blessings to those who listened.> Carolyn> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Thank you for your heartfelt post. You have said exactly what I have been thinking the last few weeks. May God bless us all. Quote Link to comment Share on other sites More sharing options...
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